Zadeh Sima, Pao Maryland, Wiener Lori
The National Cancer Institute,National Institutes of Health,Bethesda,Maryland.
The National Institute of Mental Health,National Institutes of Health.
Palliat Support Care. 2015 Jun;13(3):591-9. doi: 10.1017/S1478951514000054. Epub 2014 Mar 13.
Each year, more than 11,000 adolescents and young adults (AYAs), aged 15-34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions.
We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCES™.
Voicing My CHOiCES™: An Advanced Care Planning Guide for AYA became available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers.
Successful use of Voicing My CHOiCES™ will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patient's goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCES™ and on how to work through each section alongside the patient are provided.
每年有超过11000名15至34岁的青少年及年轻成人（AYA）死于癌症和其他危及生命的疾病。为了促进从治愈性治疗向临终（EoL）护理的过渡，建议临终讨论成为常规流程，在接近诊断时开始，并贯穿疾病发展轨迹。然而，很大程度上由于对临终话题以及如何进行相关谈话感到不适，医疗服务提供者在很大程度上避免了这些讨论。
我们通过美国国立癌症研究所对患有癌症或小儿HIV的AYA开展了一项两阶段研究，以评估AYA对临终规划的兴趣，并确定AYA希望参与临终规划的哪些方面。这些结果为了解哪些临终概念对AYA重要以及在内容、设计、形式和风格方面的偏好提供了见解。这项研究的结果促成了一份适合该年龄段的预先护理规划指南《表达我的选择》（Voicing My CHOiCES™）的制定。
《表达我的选择》（Voicing My CHOiCES™）：一份针对AYA的预先护理规划指南于2012年11月发布。本手稿提供了有关如何为AYA引入和使用预先护理规划指南的指导方针，并讨论了潜在障碍。
成功使用《表达我的选择》（Voicing My CHOiCES™）将取决于医疗服务提供者的舒适度和技能。本文旨在向可能在其实践中使用该指南作为资源的提供者介绍该指南，包括医生、护士、社会工作者、牧师、精神科医生和心理学家。我们提出了关于如何将临终规划纳入实践环境、确定讨论患者护理目标的时间点以及解决如何赋予患者权力并让家庭参与临终规划的指导方针。还提供了引入《表达我的选择》（Voicing My CHOiCES™）以及如何与患者一起完成每个部分的建议。
